6 ms·

Anyone from the deaf community that can tell us how these kind of news are received? I wonder how this compares to animosity towards coclear implants by a subs

by d0100 1y ago

Anyone from the deaf community that can tell us how these kind of news are received? I wonder how this compares to animosity towards coclear implants by a subsection of the community

guerrilla 1y ago
That was my first thought too. I wonder how many people would choose to stay deaf just to stay in the community.
retrac 1y ago
Controversial in the same way cochlear implants are. Many deaf/Deaf parents want children who hear. And I think absent the cultural consideration, almost all would want children who hear. But you can't ignore the cultural consideration. If you are deaf, and have a deaf child, curing that child's deafness means they will move away from you later in life. It's a kind of alienation even when the child remains bicultural, they usually end up almost entirely in the hearing world. That said, most deaf people who have children have hearing children anyway. Hereditary deafness like that is relatively rare like that. But for people from such families, and who live in a culturally deaf world -- they are not disabled. The cultural environment they live in is ... one in which deafness is not disabling. And it's going to be a very high hill to climb to convince them that they are missing something. They certainly don't feel it. This is particularly true in the United States which has such a proud tradition of deaf culture and education -- you can go all the way to doctorate level studies in ASL, work in ASL, the hearing world being a strange foreign culture you only rarely wade into -- only rarely need to. I'd cure it for myself, and my child if I had one. No question. But I'm not culturally deaf. I feel isolated by it in the same way most hearing people anticipate deafness to be as an experience. But again -- people who live in the deaf cultural world -- they do not feel that, and they don't feel disabled because, in their context, they aren't. It's hard to communicate this to most hearing people. The usual response is dismissive, and unfortunately I think a lot of that ultimately goes back to very old metaphysical attitudes towards language and intelligence. A lot of hearing people still don't believe, deep down, that sign languages are equivalent to spoken languages, in particular. It's just gesture. You're lacking something essential to the human condition without spoken language. Etc. But for the culturally deaf, nothing is missing from their lives, except the perception of sound.
- bigstrat2003 1y ago
  There are few things that make me angrier than trying to hold back cures for deafness because of "cultural erasure" or whatever the phrasing is. It is utterly reprehensible. To try to keep someone disabled (yes - disabled, not "differently abled", they are objectively lacking a capability that a healthy human has) just so that there are more people in your community is objectively evil in my book. It is directly doing harm to people for one's own benefit. If a person wishes to not get a certain treatment - fine, that's their right. But when one starts trying to keep others down, that's not ok.
  - retrac 1y ago
    I said "not disabling", not that deafness is not a disability. Those two things mean different things to me. Obviously deaf people cannot hear. Not able. Dis-able. Deafness is a disability. But not all disabilities are generally disabling of individuals. The only disability that deafness causes is a lack of perception of sound. Hearing people have a panoply of inferences about what that means -- about how it disables and how broadly it disables. And most of them are faulty. It doesn't result in isolation, in particular, in a deaf cultural context. In fact in the deaf cultural context about the only thing missing is some auditory alerts that would be nice as a visual complement, and some aspects of music and the like. Yes. Birds chirping is beautiful. I miss it deeply. It'd be nice to have a world where every kid gets to experience that. But all of the social and emotional and cognitive consequences imagined of deafness, are not innate to the lack of hearing.
    - MintPaw 1y ago
      I'm empathetic to this argument, but there needs to be some kind of differentiation between preserving culture and abuse for the sake of community. I can imagine the same argument applying to a cult with cruel traditions, or hazing in general.
      - smaudet 1y ago
        It's more than that (not deaf either) - if suddenly there is a new therapy to grow a third eye in the back of your head, should you? Or should a fish be able to breathe without water? In both cases there are ways to function without fundamentally altering the body, and neither is wrong. It is not so clear that there is "abuse", when there is an empathetic standard of living. Now to me, the best argument for taking this is that deaf people do have ears, whether or not they function. So it is reasonable for them to experience sound, but also, they have a right not to, if they so choose. What I think is harder, if you have experienced neither, to be able to make that decision well. And nobody is talking yet about reversing such a therapy...
vasusen 1y ago
I am not from the deaf community, but my son has severe hearing loss. I really look forward to a world where condition like his simply becomes fixable like bad teeth and he doesn't have to miss out on so many things.
ezfe 1y ago
I have severe hearing loss and that animosity is so stupid. My handicap is handled very well by my hearing aids and everyone should have that opportunity.
zie 1y ago
It's a double edged sword, because it shrinks the already small deaf/HoH population and we can't yet eradicate hearing like we can smallpox(completed), polio(mostly gone), etc. It's awesome that it works for some people, just like CI's work for some people(but not all). Until we can restore hearing(or insert favourite disability here), to everyone, it's going to be controversial inside of those communities, because it makes our already smaller world, smaller. Which causes lots of emotions as you can imagine. That doesn't mean our world has to be smaller, even now. There are lots of things we can do to make deaf people's worlds bigger(and again, insert any other disability here). We choose not to do them because some people think they are hard, some people think they are expensive and some people think it's not needed. Perhaps some of that is true, for some items on the massive list. “Blindness separates people from things; deafness separates people from people.” - Helen Keller Deafness doesn't have to separate people from people, but it does. Until we can eradicate XXX disability completely(unlikely) we should as a society strive to make their worlds bigger, not smaller. Sadly so many people don't feel that way, for various reasons.

by d0100 1y ago

Anyone from the deaf community that can tell us how these kind of news are received? I wonder how this compares to animosity towards coclear implants by a subsection of the community

guerrilla 1y ago

That was my first thought too. I wonder how many people would choose to stay deaf just to stay in the community.

retrac 1y ago

Controversial in the same way cochlear implants are. Many deaf/Deaf parents want children who hear. And I think absent the cultural consideration, almost all would want children who hear. But you can't ignore the cultural consideration. If you are deaf, and have a deaf child, curing that child's deafness means they will move away from you later in life. It's a kind of alienation even when the child remains bicultural, they usually end up almost entirely in the hearing world. That said, most deaf people who have children have hearing children anyway. Hereditary deafness like that is relatively rare like that. But for people from such families, and who live in a culturally deaf world -- they are not disabled. The cultural environment they live in is ... one in which deafness is not disabling. And it's going to be a very high hill to climb to convince them that they are missing something. They certainly don't feel it. This is particularly true in the United States which has such a proud tradition of deaf culture and education -- you can go all the way to doctorate level studies in ASL, work in ASL, the hearing world being a strange foreign culture you only rarely wade into -- only rarely need to. I'd cure it for myself, and my child if I had one. No question. But I'm not culturally deaf. I feel isolated by it in the same way most hearing people anticipate deafness to be as an experience. But again -- people who live in the deaf cultural world -- they do not feel that, and they don't feel disabled because, in their context, they aren't. It's hard to communicate this to most hearing people. The usual response is dismissive, and unfortunately I think a lot of that ultimately goes back to very old metaphysical attitudes towards language and intelligence. A lot of hearing people still don't believe, deep down, that sign languages are equivalent to spoken languages, in particular. It's just gesture. You're lacking something essential to the human condition without spoken language. Etc. But for the culturally deaf, nothing is missing from their lives, except the perception of sound.

bigstrat2003 1y ago
There are few things that make me angrier than trying to hold back cures for deafness because of "cultural erasure" or whatever the phrasing is. It is utterly reprehensible. To try to keep someone disabled (yes - disabled, not "differently abled", they are objectively lacking a capability that a healthy human has) just so that there are more people in your community is objectively evil in my book. It is directly doing harm to people for one's own benefit. If a person wishes to not get a certain treatment - fine, that's their right. But when one starts trying to keep others down, that's not ok.
- retrac 1y ago
  I said "not disabling", not that deafness is not a disability. Those two things mean different things to me. Obviously deaf people cannot hear. Not able. Dis-able. Deafness is a disability. But not all disabilities are generally disabling of individuals. The only disability that deafness causes is a lack of perception of sound. Hearing people have a panoply of inferences about what that means -- about how it disables and how broadly it disables. And most of them are faulty. It doesn't result in isolation, in particular, in a deaf cultural context. In fact in the deaf cultural context about the only thing missing is some auditory alerts that would be nice as a visual complement, and some aspects of music and the like. Yes. Birds chirping is beautiful. I miss it deeply. It'd be nice to have a world where every kid gets to experience that. But all of the social and emotional and cognitive consequences imagined of deafness, are not innate to the lack of hearing.
  - MintPaw 1y ago
    I'm empathetic to this argument, but there needs to be some kind of differentiation between preserving culture and abuse for the sake of community. I can imagine the same argument applying to a cult with cruel traditions, or hazing in general.
    - smaudet 1y ago
      It's more than that (not deaf either) - if suddenly there is a new therapy to grow a third eye in the back of your head, should you? Or should a fish be able to breathe without water? In both cases there are ways to function without fundamentally altering the body, and neither is wrong. It is not so clear that there is "abuse", when there is an empathetic standard of living. Now to me, the best argument for taking this is that deaf people do have ears, whether or not they function. So it is reasonable for them to experience sound, but also, they have a right not to, if they so choose. What I think is harder, if you have experienced neither, to be able to make that decision well. And nobody is talking yet about reversing such a therapy...

vasusen 1y ago

I am not from the deaf community, but my son has severe hearing loss. I really look forward to a world where condition like his simply becomes fixable like bad teeth and he doesn't have to miss out on so many things.

ezfe 1y ago

I have severe hearing loss and that animosity is so stupid. My handicap is handled very well by my hearing aids and everyone should have that opportunity.

zie 1y ago

It's a double edged sword, because it shrinks the already small deaf/HoH population and we can't yet eradicate hearing like we can smallpox(completed), polio(mostly gone), etc. It's awesome that it works for some people, just like CI's work for some people(but not all). Until we can restore hearing(or insert favourite disability here), to everyone, it's going to be controversial inside of those communities, because it makes our already smaller world, smaller. Which causes lots of emotions as you can imagine. That doesn't mean our world has to be smaller, even now. There are lots of things we can do to make deaf people's worlds bigger(and again, insert any other disability here). We choose not to do them because some people think they are hard, some people think they are expensive and some people think it's not needed. Perhaps some of that is true, for some items on the massive list. “Blindness separates people from things; deafness separates people from people.” - Helen Keller Deafness doesn't have to separate people from people, but it does. Until we can eradicate XXX disability completely(unlikely) we should as a society strive to make their worlds bigger, not smaller. Sadly so many people don't feel that way, for various reasons.